Budd-Chiari Syndrome

[Jadewhitt96]

I'm 18 years old and in November 2014 I was diagnosed with BCS and have been undergoing various treatments. The doctors say I could have had it for months/years, they say it's very uncommon for a young girl to have this condition. I'm just wondering if anyone else is in the same situation or have been in this situation and would give me some advise because to me it doesn't feel like there is any change. I'm still in pain continuously and keep inflating with fluid.. Thanks

[Bermuda1]

There is a Facebook group to promote awareness of this and Polycythmeia. It is a closed group, meaning you have to ask to join. facebook.com/groups/1797331...

They may have a blog or discussion threads. Worth a try.

[Neph]

Hi I was 25 when I was diagnosed with bcs. I was admitted to hospital, where I ended up in icu. I had the TIPPS procedure done. This was in 2012. Since I was discharged from hospital I have had no problems with asites (fluid) but I have to have 6monthly checks with my liver consultant.

Where about is your blockage? Have you started taking warfarin or other blood thinners?

I still get pain too and just take paracetamol for it. I hope this helps. Feel free to ask questions if you like.

[mms79 in reply to Neph]

Hi Neph,

Is paracetamol adviced by GP ? use of paracetamol is restricted/reduced in patients with liver diesease as it may increase the liver toxicity. I am also diagnosed with bcs in 2014 and on anticoagulation workup (warfarin) can you suggest why this pain occurs as no asites or edima is developed in my case ? please reply as your answer will help to understand much better.

[Neph in reply to mms79]

Doctors always tell me to take paracetamol, but we could not have nurofen or ibruphoen ( excuse the spelling). I'm not sure why the pain is still there, perhaps it's because the liver is constantly under pressure/strain? But I also am JAK 2 positive and this can cause abdominal pain. Hope this helps.

[mms79 in reply to Neph]

Thanks.

[Jadewhitt96 in reply to Neph]

The blockage is in the hepatic vains.. All 3 were blocked. I had to have stints in 2 of them and the 3rd unblocked but the doctors say I could have to get a stint in the 3rd one too because I'm in the same pain as I was before the procedure. I have been prescribed ferrous sulphate, water tablets, nefupam, propranolol and tinzaparen for my blood thining. I have to go back to hospital twice a month for more scans. Will this effect any chance of having children of my own in the future?

[Bolly]

Not sure about whether any of the medication you are on would affect you during pregnancy. My guess is what you would need to consider longer term is your overall state of health (babies are exhausting, so are toddlers, lol) and how much support from family/friends you would have to help you through a pregnancy and looking after children if you are unable to due to health.

[BLTHollyDawson Volunteer]

Dear Jadewhitt96,

There some more information on our website about Budd-Chiari Syndrome (BCS): britishlivertrust.org.uk/pu...

It is important to keep on top of your condition and make appropriate changes to your diet, as this will help you stay well, have you been referred to a dietitian?

If you have any questions you should discuss them with your consultant/ hepatologist as they will be able to give you a better idea of how your BCS may progress, treatment options and future plans.

It is important to stay positive, you have been diagnosed early and this in the long run means you can treat both the BCS and if there is an underlying cause this can also be treated.

Please don’t hesitate to contact me or the Trust for any further information and support.

Kind regards

Sandy

[TicTacToe]

Hi I was 20 when I was diagnosed with BCS in May 2015 I had the same symptoms as you and after undergoing various tests, scans and endoscopic procedures to stop the bleeding in my varices the consultants came to the conclusion in Dec 2015 to go ahead with the TIPSS procedure since then the fluid has gone and I feel brighter and positive but I still do suffer from fatigue, drowsiness and aches/pains in my abdomen but I've learnt to adapt to my condition and take everyday as it comes.

I definitely think you should chat to your consultant and see what options are available to you at this point in time.

And please don't hesitate to ask me any questions- talking about it really helps

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